I initially intended this as a message to my older patients, or those with chronic, life limiting illnesses. But now, with a pandemic in our midst, everyone should be thinking about their end-of-life care wishes.
Many physicians, nurses and other bedside caregivers, knowing the heightened risk they face of developing COVID-19, are actively reviewing their own wills and having discussions with loved ones. My wife and I have followed suit. Though I’m a primary care physician and have been looking after my patients through telemedicine, if the need is great enough I would go to work in a hospital.
Even if you don’t face that prospect, making your wishes plain is simply good citizenship, now more than ever.
We’ve all heard about the critical lack of ventilators, the high-tech machines needed to help the most critically ill COVID-19 patients breathe. These are life-saving devices, provided the patient is strong enough to pull through.
But for those who are simply too weak to recover, ventilators merely postpone death – which is why many end-of-life documents specifically state when technology like this should not be used. But if you have no care document, and your condition reaches a futile stage, you force your physician to agonize over removing you from a machine that could save someone who is more likely to recover.
In my practice, I have encouraged patients to think about their end-of-life wishes and discuss them with their families. When asked about their preferences, I often hear something like: “Continue treatment as long as I have a reasonable chance of doing things that give my life meaning. Otherwise, don’t let me linger on life support.” Others have more specific wishes – which can include, “Do everything medically possible to keep me alive.”
The perennial problem is that by the time these decisions must be made, you may be unable to communicate, so your next of kin or other surrogate will speak for you. And they may not see things quite the same way as you would have chosen. Moreover, the doctor who cares for you in the hospital may not be someone who knows you at all.
Adding to the urgency is the way COVID-19 has transformed end of life care. Seriously ill patients in overwhelmed hospitals with less than ideal staffing and no-visitor policies may be cut off from the advocate who can be sure their wishes are carried out. Especially now, your most assured advocate is your advanced planning document, which should be part of your electronic medical record.
Physicians have begun to more fully embrace and prioritize advanced care planning. Literature abounds, and some very practical conversation guides such as Ariadne Labs Serious Illness Conversation Guide have been developed to help us navigate these challenging discussions.
You may be fortunate enough to have a physician, partner, child, caring relative or friend ask you about your care wishes in case you become critically ill and unable to speak on you own behalf. I implore you, though, to act now, whether prompted or not. If you are uncomfortable starting a conversation about this, there are numerous online platforms such as Penn’s Our Care Wishes (ourcarewishes.org) where you can clearly articulate your preferences, and share them with loved ones, friends and with your health care provider.
End of life discussions may seem morbid, almost like you are inviting misfortune. In truth, they are a way to acknowledge the way you live, so your values and priorities can be celebrated and respected even if you are not able to communicate. These conversations have greater urgency now while COVID-19 places all of us at a more unpredictable risk of serious illness. We will emerge from this pandemic wounded, but with greater wisdom. Moving end-of life conversations and directives into the mainstream would be a lasting gift born out of adversity.